When the big T hits you every evening at 3am!

[Footballer58]

Hi all - I have had T badly for two years now, firstly it was bad then settled down. It ranges from a high pitched whistle to a long high pitched drone, it is worse at bedtime every evening, The T itself exhausts me and I am desperate for sleep to come. I do drop off but know what is coming in a few hours each night? I have a sleep mask with the usual rain, waves, meditation sounds on all night when in bed. However just recently I went on my first plane journey for two years, I returned (stressed) and now the big T wakes me up every single night! it is so LOUD I feel like I am drowning in sound!! I do my breathing techniques also but the almost pain like irritation and stress is now wholly debilitating, getting back to sleep is taking longer and longer. Frankly only a few glasses of red wine helps ! and that is no long term answer. I live in desperate hope that it will settle down again as it did two years ago fairly soon - does anyone think it will? is there any chance it will go? I am just turned 60 and I cannot face the rest of my life like this? Can anyone relate to my desperation and offer anything to help me get over this period? Thank you all

[Happyrosie]

Hello Footballer - I feel sure your T will settle. Just like it did before. That's the nature of the beast - you think you got it covered and it attacks you from a different direction. Here in this forum there are lots of people who sympathise with you and know what you're going through - glance through some earlier posts if you feel it might help.

Here I am quoting from a post from a few weeks ago about how someone else coped with the T.

• I used a sound generator app (I used ReSound Relief but plenty of others out there). I mixed sounds that (1) I found pleasant and (2) mapped well to my T. Audiologists tell us to map the volume of the sound to just below the volume of your T. As time went on and I felt more 'positive' towards my T I slowly reduced volume until I no longer needed the sound generator

• I tried to use positive reinforcement in relation to the sound from the generator app. The sound I had chosen was beach, waves, and rain, when I would go to sleep, I would listen to the sound and think of lovely holidays I have had walking on the beach. As T creates such a negative emotional reaction, these types of thoughts allowed me to calm down and think about something other than my T

• When I was lying in bed if I felt stressed and my mind was focused on my T I would follow a mindfulness body scan. I found this very calming and did take my mind off my T

• I used BTA support group to help me learn more about T and techniques to move towards living well with T. As I learnt more and managed to reduce the negative emotional reaction to my T I would even say 'hello' to my T when I first settled down to sleep. The reason I did this is I found when I was stressed by my T it was always at the forefront of my mind so I found that if I said hello to it then (1) I had acknowledged it and my mind could move on to something else (2) by saying hello I was reducing my fight/flight reaction to it and this helped me to 'normalise' it for me.

• I tried to follow a good sleep hygiene pattern (maintain a regular sleep routine, avoid daytime naps, don't watch TV or use the computer in bed, no caffeine after 18:00 and as I am a clock watcher I put the alarm clock out of sight so I wasn’t constantly looking at it.

This is what another poster said and I find it really insightful.

[Footballer58 in reply to Happyrosie]

Thank you very much - this ALL helps in a small way each bit...

[surreycccfan in reply to Footballer58]

In addition to the above another thing I would add, is physical exercise. I found when I was physically tired from exercise in the day this really helped me sleep through the night.

As well as the good sleep hygiene, how do yo feel about your sleep. Is this waking up causing you to worry/fear sleep. If so this is something you may want to explore as if you have these feelings by understanding and desensitsing them it 'could' maybe help you sleep through. One excellent way of doing this is doing CBT, this is free on the NHS and you can either talk to your GP to get referred or you could self refer here nhs.uk/mental-health/talkin...

[surreycccfan in reply to Happyrosie]

Nice reply Happyrosie

[notdodgy]

Hello, I tend to go to bed late to be tired enough to get to sleep. If I wake up then it is loud. I also use a sleep mask and found one that is comfortable. I use the ReSound Relief app which lets you mix different sounds and this helps.

There are times when I sleep all night with the sounds playing.

Sometimes I will put headphones on and play music, either relaxing non vocal or more complex like 8D/ASMR to get my brain to focus less on the tinnitus.

Sometimes it is a struggle and I settle for making sure I have a rest even if sleep is restless.

Unfortunately it's trial and error and you have to keep changing what you use.

[Footballer58 in reply to notdodgy]

Thank you notdodgy - its good to at least know that people feel similar! x

[doglover1973]

Hi Footballer58 So sorry to hear your T has spiked . Yes I think it will settle. T spikes and settles regularly. Whether it will go or not is another matter. I believe most people's T is here to stay . Yes I can relate . This time last year I was in dire straits. Wondering - like you - how I was going to get thru the next 30 years. All I can say is things do get gradually better. Just like they did for you the first time . Hang in there . Relax as much as possible. Keep talking. It really helps .

[Footballer58 in reply to doglover1973]

Thank you doglover1973 - its good to at least know that people feel similar to me Thank you

[bantams]

Hi Footballer58,

Sorry to hear you are struggling, i`m sure it will soon settle down so that you can live a near normal life again.

I have been in the same place as you, just could not face living at times with Tinnitus, I now wear hearing aids with a built in ocean wave masker when my Tinnitus is bad.

I also try to keep busy and go watch football matches which I think you might like by the sounds of your name.

When my team are playing badly and I am shouting at them, I really do not hear my Tinnitus!!!

Good Luck Alan

[Footballer58]

What a wonderful response Bantams. Cheered me up massively thank you

[Hidden]

Hi Footballer58

Yes the vicious circle of tinnitus...

Hope you get some respite... I try a range of things depending on the stage it is at - total silence, smooth FM, pacing my socialising, 70s and 80s music channel on TV - and, as previous poster said, sometimes sitting up later til I'm exhausted...then sleep comes easier.

Mine's builds up with inner ear pressure then it gets unbearable and peaks every 2/3 weeks and I'm left dizzy and shaking then I have a couple of good days then it builds up all over again. I sometimes take cinnarzine (available at chemists as Sturgeron) it helps with the noise though I hadn't expected it to, I got it prescribed for dizziness and nausea which I sometimes experience at the peak/spike/worst point.

Like you, I have a lot of nights when I wake in the middle of the night. It is hard. Patchy sleep has a real impact on overall health too.

Here goes: something else that I do which may sound wacky is silently 'voice' my thoughts, like give them a voice as though I'm talking to myself (In the same way everyone does while reading).

It may sound strange - but this 'narrative' in my head works and I sometimes address the tinnitus and say 'oh that's you starting back up again is it?'

Then I try to think of other things...basically whatever works. Light-hearted TV programmes before bed help me too. I try not to watch anything serious or upsetting late at night. I enjoy reading - (non-gory) crime, thrillers, historical, tons...I'll read anything apart from Lord of the Rings, ha ha.

I'd rather have life like this than no life because I like to think living is a joy, albeit a messy, unpredictable one - and tinnitus has made me much more strong-willed plus it helps with empathy - everyone is kind here. Take care

[Footballer58 in reply to Hidden]

Thank you Fuzzy - although not new to me, this really helps to share thank you